while the results in pt are different for every patient that distinction seems to be magnified when dealing with crps/rsd.
i think the biggest deciding factor regarding a positive vs. a negative experience is the knowledge of the therapist. i have been in pt for a total of about 14 years so i have had a lot of experience with both the good and the bad. while it is great to find a pt who has handled a lot of crps/rsd patients the best pt i ever had was one who when he first encountered me had never heard of rsd but he was willing to learn. the first thing we did was lay down some ground rules, i was willing to try anything but if it really hurt we stopped. we worked together for the better part of two years and because i was basically the pateint he learned from he did his homework. he got online and looked up everything he could find, he called every doctor he read good things about and asked for advice, and most importantly he made sure that myself, my doctor, and him talked about what was working and what wasnt regularly. he kept a journal in which he wrote down everything he read about, everything we tried, and how everything effected me. he wasnt the most knowledgable pt when it came to rsd/crps when started but by the time he moved two years later he had more hands on experience than most specialists. in addition to learning himself he made it a point to hold clinics for all of the pts in the clinic so everyone of them (pt students included) knew everything he did about what works and what doesnt. to this day he may be 2,000 miles away but we remain in email contact. when he attends a confrence on the subject he always asks me questions about the treatments he has learned about. when he has a rsd/crps patient who is struggling he emails me with questions, and i try to give him suggestions based on things that have helped me.
pts go to school for years to learn about anatomy and injury related rehab, however very few pt programs require students to spend time focussing on pain patients. for the same reason a gp doesnt have the knowledge to treat a chronic pain patient as well as a pm or a neuro, the pt struggles. until all programs require students to focus time and knowledge on chronic pain we as patients will continue to have to search for pts will first hand knowledge. if you can get into a pt group that is affiliated with a pain clinic that is probably your best bet, for those who cant do that (myself included) the only option is to go to the pt office our doctor sends us (a pm or a neuro will probably have better recommedations). if you are uncomfortable with the pt with whom you have been assigned write down your concerns and discuss them with your doc. maybe a alteration to the pt program can solve the problem, if it doesn't than your doctor should be able to help you to find a more compatable pt.
if a pt is beating you up in a session to the point that your pain is off the charts for days or weeks following the visit something is seriously wrong. the only way rsd/crps paitent is going to improve is to find a comfortable balance between the amount of pain they experience during the session and the amount of time it takes to recuperate. the reality is that without motion our bodies shut down. for those of us who have experience dystonia we would be willing to suffer a great deal if it meant that we would be able to function when the pain subsided. the reality is the longer your body either fails to function or funtions in an abnormal way, the harder it is to return to some sembalance of normal. my dystonic foot existed for 2.5 years, i had my scs in march and that allowed my body to correct itself but only so far. now i have to wear a brace in my shoe and one while i sleep and while there is obvious improvement the reality is the road back is extremly long.
some pain is good but both you and your pt need to be comfortable with when it is ok to say enough. if a pt wants to go from taking your history to massaging or active stretching i would proabably say thank you very much but i dont think this is going to work and walk out. a slow introduction to range of motion or passive streching is a good place to start. while the excersises may not seem particularly challenging it is a good way for your pt to get an idea of where you are at physically. once that baseline is in place they can add a little challenge into the session slowly. a good pt will add some more challenging excersices in a session and then the next time they see you take a few minutes to see how you did following the session. if you were miserable for days or continue to be miserable days later than the routine needs to be reevaluated, if however you were feeling beaten up when you left and over the next day or two things improved and you return in the same condition you were in for your previous visit then things are probably going along ok.
the hypersensitivity treatments are the most difficult, because anytime anything touches the effected area the patient is immediatly in high levels of pain, however the desensitation is necessary. a good pt will start out rubbing a pillowcase over the area for a predetermined amount of time. if you both agree before you start that the pillowcase will be applied ten seconds on ten seconds off for 2 minutes you will know that you can count through the ten seconds it is applied and you know that the pillowcase will be applied 6 times so you cant each one. that way you can feel in control of the process. you can do the 2 min drill as many times per session you can tolerate (again it should be an established number) so you are very aware of what you will have to go through and how much you have left.
once you are desensitized to the pillowcase if you have an upper extremity presentation you may want to ask your pt if they have the heated corn air mix circulation machine (not sure of the name...maybe some one else knows it). you put your arm in the box and warm (not hot) corn meal circulates around the area. almost every upper extremity rsd/crps patient i have talked to who has tried the box says that it is wonderful.
if a pt tries to put an ice pack on an rsd/crps effected area they obviously dont know much about the disease.
a pt who treats rsd/crps patients needs to know that they arefor all intesive purposes placing their trust in their hands. if that patient feels like that trust is broken as a result of negligence on the pts part (making a patient hurt for days or weeks after is unacceptable) then the patient will assume the pt doesnt know what they are doing and are going to continue to hurt them. this relationship will never work. a patient has to trust that the pt has their best interest at heart and they would do nothing that would intentionally hurt the patient (being sore for a day or 2 is ok). without trust the pt experience will be a failure.
you need to find a pt who pushes you but not so far beyond your limits that you are effected for days.
i hope this helps
i have seen the good and the bad...the good may start out bad but quickly correct the problem, the bad continue to display behaviors that make the patient feel uncomfortable and as a result the entire intention of the patients visit to pt is a failure.
the only way to have a positive pt experience is to be your own best advocate. if something isnt working tell them why, and what could be changed to fix the problem. if the problem isnt resolved following input then the best thing the patient can do is move on to another pt and try again. if a problem with insurance arises as a result go back to the doctor who wrote you the script and ask them to alter your script (tell them what you experienced and what you thought would have helped) and ask for a new script. that way the insurance company will understand why you are switching to a different pt and not fight the additional charges.
hope this helps

Nice to meet you and great post there wakegirl! I agree with you 100%. Thanks to people like you, others here and the web I am beginning to understand more about physio for CRPS/RSD.

coachvand and Daniella. I would love to try the pool. I have heard it is wonderful and great for those with lower RSD/CRPS. Hopefully this new place will have the pool.

The RSD/CRPS is starting to wear me down emotionally and mentally. I still have yet to have someone actually expain anything to me. I me, about me and what is going on with me. My physiotherapists told me to come to them when I was in pain so they could SEE and understand.....had expressed my opinion to them about that one (every day lately my left wrist wants to just drop. I don't know why or what is causing it but it gets painful and then just wants to drop. urgh...). I think I also mentioned that here also, about not being able to SHOW her things because it isn't something she can see and that is why she thinks it isn't there. Though she is suppose to be the expert! Anyways, I digress.

So, physio is now the following:
Wearing runners (yesterday was first time and my doing) HURTS LIKE A B%^#$ard! But I did it and am going to keep trying to do it.
20min treadmill
Squatting with a ball behind my back and standing on a half moon ball thing
leg presses on a machine
Adductor/abductor pulls with a rubber toob
Obstacle course
more stretches (about 5 types of stretches)
Repeat as many times as can within 3 1/2 hours
30min-45min of one-on-one for
desensitization with cotton balls and macaroni and manipulation stretching
Did I mention yet, I hate this place?

So, I am suppose to go to for an assessment at this other clinic next week. It is a day and a half meeting with everyone there - doctors, pts, neurologist, psychologist, etc. As part of my recovery team they review me and my meetings with them and see if they can help me and if I am a good candidate to get into their program. I was told that on average their programs last about 6 weeks but I think this is just an intake person and doesn't really know for sure what CRPS is.

Can anyone tell me how long a person should expect to be in pt when they have CRPS, early stage and good ROM? Basically if I can get my strength up and get desensitized I should be good to go. That's what I am thinking but no one can tell me anything. What is the average? Even with good ROM and maybe poor-good strength? What is to be expected? Does exercise - stretching and weight bearing activity for a person with CRPS in the foot (still possibly in feet and neck/face/head) - make CRPS go into remission? Oh, plus desensitization 4x week. How long can desensitization take? I mean really, I can handle quite a bit one day but the next I am upset or something and everything drives me off into the deep end.

Like I said. I am down and out this week and having a hard time trying to pick me up again. I am tired, learning sleep does not equal actual quality sleep and that is stacking up on me. I keep getting told, you can't hurt yourself doing anything here. Sure, okay whatever. They have asked me to explain to them what 'over do it' means and how that is possible. Can anyone help me here with that one? How can I explain it to them in a way they might be able to understand? They seem to think that if I am hurting it is just because of not using a certain muscle group or....they have a reason for everything and only when I tell them, not I actually didn't do that today or that at all, I get, well I don't know you must have done something because you can't over do it or hurt yourself with what we have given you.....ugh. Like I said. I am tired. Help me out if you can. Thanks. J

Has anyone done fluidtherapy? I think that was the name I did it at cleveland clinic. You put your legs in this machine that is filled with sand. The machine goes at different speeds and temperatures. You gradually build up time and speed. This is suppose to desensitize the nerves.I understand about needing to move the effected areas my issue is with a person touching me is that one my pain is not always horrible immediate but the aftermath is hell. Also it just takes someone to do too much or stretch the wrong way. I can see why it is so important for the person to know about rsd.
Kyzy is this a day program? I just ask cause I did well only made it through part cause my pain level was so high but at cleveland the day program is m-f 8 hours a day. I'm like you about the overdoing it so I understand your fears and concerns. I don't have advice cause I'm trying to find the balance of pushing but not going past my breaking point.

Well, I got some unexpected news today. I am off to the new clinic Tuesday evening to get settled into my hotel. I thought I was just going there for a two day assessment, nope! 6 weeks of m-f 8-3pm! But this place is suppose to be spectacular! I know, don't get my hopes up too high but they are suppose to specialize in it and have a full team of doctors and pts to look after you.

I honestly don't know what to say or to think. I am a little nervous because as far as I know they can only address those things WCB says to, namely my ankle and not my face. So even if I do go through this program and only my ankle is addressed I could have CRPS in my face for three months by then and in my other leg, I don't know. If my CM thinks the neurologist's wishes to rule out MS and a couple of other things are warranted then I will be able to get away to deal with that at the same time.

I am just really worried about what is going on in my face and embarrased. I get these lovely red/purple blotches and streaks on my face or half my face will be red and the other half white and frozen cold. I don't know for how long I will be able to manage with the headaches either if they don't look into it more. I don't know. I will have to talk to my CM to see what she thinks about everything. Mind you if the doctors there see that it is starting to interfere with my treatment then, maybe they will suggest looking into it further or dealing with it there. Who knows? I am just tired of guessing and not progressing.

TTL J

Good luck. It sounds similar to when I went to Cleveland. Where is this progam if you don't mind me asking? I know that there they focused on the major issue but also worked on underlying stuff and what else may be going on in your body. I know at the pain clinic day program they sent me to the anastesolgist because of my issues and they don't do that for everyone. So you never know and maybe if you ask.I know the guessing game too and hate it. I hope you have some luck at the program. I will say that the people I met there who also suffer with pain were amazing and great support. I hope you find the same. A note too on the hotel make sure you try to get a fridge and micro cause after a long day going out to eat may not be what you want to do.

I really hope that you get better. Don't panic, I am sure that it will be Ok.
Good luck and let us know how it goes
Hugs and Prayers.
Love
Alison

PS: If you get a lot of pain tell whoever is with you that you need a rest until the pain goes down a bit.

Thanks you guys SOOOO MUCH for your support.

The pain clinic is in Canmore, Alberta. Ever since I have been telling people about it they are saying great things about it. My husband is really supportive and very excited that I can now go to a clinic where I want to go and to people who have dealt with this type of thing before. Right now I am really excited myself. I leave today! I will be taking my laptop with me so I will still have access through the week.

The hotel is two blocks from the clinic and there is a shuttle bus between the two if we want to take it. My room does have a microwave and fridge and I am bringing a couple of meals I froze at home for the week. I know WC has an allowance for lunch and dinner but I will likely be eating my own meals for the most part.

I am sure I will make a few new friends there. I really am looking forward to it. I am still waiting for WC to find out if they are going to cover the next MRI, if so, it can be expedited. If not, well we shall see what they have to say at the clinic. I am sure things will work out for the best there. I also don't think I will actually be there the full 6 weeks but again, who knows!

Well, I will talk to you all later and let you know how things go.

Best Wishes and thinking of you all. J

Hi,
I really hope you get the treatment you need and deserve, I am sure that you will make many friends there. It is always nice to talk to someone who knows what you are going through and maybe at the end of the course you will be able to stay in touch with the friends you make example via email, phone etc. Is your husband going with you, or isn't he allowed?
It is good that you get to stay in an hotel whilst you are there
I think that it is good that you are seeing a Psychologist, RSD does get you down a lot
Please keep in touch with us
Pain free hugs
Love Alison

GOOD LUCK